Dusty,
Thanks for asking. I am doing well, a whole lot better than this summer, but every day is different.
I am on florinef 0.05mg to 0.075mg daily. I take 0.05mg am and sometimes a little more at 2pm. I think that is working pretty well for me. For a while I was drinking more water, and I think that may have been making me swell more, UGH! I do not feel healthy when I restrict my water intake, but I think I might be struggling with this SIADH thing. I drink one V8 juice, and one soup a day, and salt my food.
My HC is up from before. I am on 5mg am, 5mg 11am is 2.5 at 2pm, and 2.5 at about 4 to 5pm. If I am working late sometimes I will take 1.125 at 6 to 7 pm. I started to feel really good at this level, and backed off a little, and started to feel like crap. I know it is weird to take 5mg in am, but actually I feel just fine at that time of day.
Overnight I get head pressure still. I think it is on account of not having HC and lower serum concentration of florinef. I feel it in my left occiput, and in my pituitary over my nose, and in my eyes not moving right. I take the meds, and it resolves. Last night I took a pregnenolone before bed, and that seemed to help. It is not painful, and not a big deal except that I am so gunshy from the symptoms that I was having this summer. Even thougn it was not painful, I think I had full blown pseudotumor cerebrii developing and it made me feel almost suicidal. So any head pressure freaks me out, I do not want it to become chronic.
Which brings me to my real issue......why do I have this?? I made an appointment to see Rees Jones. No openings until November 19th. I am hoping he will agree to run a GHRH-arginine test for growth hormone.
This may sound nuts, but I am almost sure that I can feel my pituitary (and more to the point pituitary stalk) shriveling on the left side of my brain. I think that is why I get the head pressure. I am fairly sure that my issue is because of Sheehans syndrome. The blood loss from pregnancy I had in 2006 was very substantial. In retrospect I think I have been mildly hypothyroid, and salty sweater since then. The mean onset of Sheehan's is acutally 3 years (spot on). Most docs are trained to think that it happens immediately, but it does not. Sometimes it can take up to 40 years to kick in.
Anyhow, I got pregnant again, my pituitary grew.....and then after the pregnancy......is when the problem started......pituitary began to shrink. I had huge problems breast feeding. .....and then once I stopped breast feeding entirely (pituitarty shrinks further)....is when the head pressure developed.
When TSH was done it was normal, but free T4 was "borderline" low. My thyroid was giving me pressure in my throat, my hair was coarse, falling out, nails brittle, puffy, skin dry, freezing cold.....etc.
I want to know if I am GH deficient, because if I am, I want to see if I can get insurance to cover it.....also want to be able to get it without seeming like I am trying to do some sort of "anti-aging" medicine thing.
Only thing that is unexplained is the pigmentation. I hyperpigment (a little). Not all that obvious to anyone but me. But Chris, on the stopthyroidmadness web site states that he believes that mild hyperpigmentation does happen in secondary. My theory is this: ACTH fails to stimulate adrenals, adrenals start to dysfunction gradually.....when they reach a tipping point the pituitary gives it all its got left....so there is mild hyperpigmentation....but at this point the adrenal not able to respond properly. ( I did read this somewhere)
My other theory. I think that diagnosing secondary is part of what the real issue is with diagnosing addison's. I think that a clear cut primary is like a clear cut primary thyroid. TSH goes up....boom diagnosis made. With secondary addison's, I think the decline is slower and more subtle, and harder to get lab test to validate. I think that secondary is more common than we realize due to head injury. Don't know if you have heard the knews lately about all the NFL players who are getting premature dementia. Anyhow, I think there are a lot of head injured folks who have partial dysfunction of pituitary, and pituitary stalk.....that leads to a gradual, insidious decline.....hard to catch on labs. (and I think there are other mechanisms for pituitary decline)
Or I'm just nuts ;) but I'm stickin to it. Long winded answer to short question.
I did write down my story. I need to go back, take a look and edit...and I will send you a draft,? at contact@addisonssupport.com?
How many people in US have addison's? How many folks do you have on this web site?
Take care,
Shannon
